The story of my diagnosis is completely unusual; I happened to go to an annual asthma clinic – I’ve always been slightly asthmatic, and have a clinic once a year – I know the asthma nurse and every year I’d have a chat over a couple of tests – we’d say “how are you going?” and “when’s your next holiday?” – and at the end she’d say “anything else?”
I didn’t mean to say it on that day but I just said: “I think I’m a bit lighter than I thought I actually was”.
She said “have you been meaning to lose weight?” – I said “no”. She said: “Well, just to be absolutely sure let’s do some blood tests”.
One of the blood tests (haemoglobin) came out quite low. So she asked me to go and do it again, to make sure it wasn’t a one off – and it came out even lower. So I got a call to come and see the GP immediately, with an appointment, ready made – and I thought, “what’s going on here?”
When I walked into his office he said he wasn’t expecting to see such a well looking man, looking at the haemoglobin results, and he said, “to me that’s a sign of iron deficiency anaemia, so I’m going to refer you to an anaemia clinic”. I said, “fine, OK”, and off I went, not thinking there was anything going on.
Eventually (and I’d even gone on holiday in the meantime – all the way to Barbados for two weeks) I came back to find an appointment that was another month ahead, I said to myself “this timing isn’t right for me” and I suddenly remembered that I could invoke my health insurance from the company that I was in – so I phoned up and asked the GP to refer me to a specialist in that subject, and I had an appointment within 48 hours.
He was immediately suspicious and sent me for a CT scan. Lo and behold there’s all sorts of things going on, and eventually they did a liver biopsy, then I went to see an oncologist who told me I had metastatic neuroendocrine tumours.
When I think back, how I know how I was feeling at the time, isn’t what I thought I was feeling at the time, if you get what I’m saying, because I suspect I was in complete shock. I think there was a little bit of denial in there that I actually had cancer, and sometimes I would go and look at my scans from my diagnosis, and look at the wording (which I now understand) and say “oh yes, you definitely had cancer”.
“So there’s a little bit of denial, and there was anger – and do you know the funny thing, the anger was because I was so busy at work, and this was going to affect it – it’s amazing the things that you think about at the time, and I just wanted to say “do what you need to do, fix it and I’ll get back to work – I’ve so many things I need to get done.”
That’s one of the reasons why I launched myself back into work – to try and sort of take my mind off it. But in hindsight, perhaps I should have given it more thought, and thought of my own personal strategy – in how I was going to deal with this, which would then go on to affect how I was going to cope with it. And so I kind of just went along with it.
Now that I’ve been living with the disease for some time, I’ve learned quite a lot about the disease itself, how it’s affecting me, how it might affect me in the future – and so therefore I’m a very pro-active patient, I advocate for myself – I keep a diary about everything that’s going on – starting from how I’ve slept, to see if that’s effecting fatigue, about what I’m eating, to see if that’s effecting bowel motility – to exercise, what my weight is, if my weight is changing – bearing in mind that’s what kicked off my whole diagnosis – so I keep a close eye on that. And I’m happy with my weight at the moment – I’m actually a lot lighter than I was when I was diagnosed – I’m actually at the weight that I should be, not that I was particularly overweight, I’ve always been a little skinny guy.
“So I’m very, very proactive now, and my diary helps me track issues; if I think there’s something I need to bring to the attention of either my GP [General Practitioner] if I think he or she can help, or my oncologist for the MDT to have a look at and think about; and that’s working fine because my GP’s very helpful as a sounding board – most of the issues that I’ve got are the things that most people get when they get to my age; I use him as a sounding board to make sure it actually is that.”
And similarly if I go to my oncologist and say “look I’ve got a lump here [places hand on throat] – what’s going on?” And he immediately knew the seriousness of the potential of that and immediately got me an MRI scan to check – so I’m proactively managing and prompting them to look at the issues that I’ve got – something perhaps that I should have done before I was diagnosed, and I may have been diagnosed earlier.
Something I say to everybody now who is looking for a diagnosis, who has got symptoms – make a note of them, see if you can tie it in with something else that’s causing it, take that evidence to your GP and don’t do what I did and just ignore it because you’re too busy at work.
Information about the emotional, physical and social challenges of living with NETs
Patient support groups for NETs can often provide social and emotional support
Learn about carcinoid tumours, GI-NETs, pancreatic NETs and lung NETs, and the symptoms of NETs